The next big thing...

Primary progressive MS
1

well, I’ve just been diagnosed with a low grade skin cancer on the back of my neck. Ironic, since I was signed off from my haematologist as being clear of lymphoma only last month. I’m trying not to worry too much, it’s a common problem and they’ll just cut it out and that could be an end to it.

Anyway, the next big thing is that we’ve just ordered my new wheelchair to use upstairs, once the alterations are done. More savings gone! I’m sticking to using the stair lift so I need two chairs. If and when we instal a wheelchair lift I’ll have one chair to sell. Wot larx!

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Hi Kev , I am sorry about your news. I have heard about that and it is very straightforward and nothing like the lymphoma.

I was in hospital recently and there was a man in his 60s who had recently received treatment for lyminphoma. Within 2 years he was wheel chair bound because of damage down to his spinal cord due to the treatment They said they has tested him for MS but ruled it out due to the fact he had no brain lesions, symptoms were all below his lesion point ie he had no symptoms arms up (arms and face). He also had no neuro symptoms prior to the lymphoma. Also he said that his MRI was not typical MS as the ‘lesion’ seemed to be different every time they scanned. Anyway I asked if he had had a LP and he said no. His doctor told him that even if it was positive his dx would not change as 20% of people without MS will have a positive LP.

I am always interested in these stories as the jury is still out on me as to whether I have MS or damage from cancer treatment. One neuro wanted to stick PPMS on me but I didnt tick enough boxes. The other is convinced that the problem has been caused by the cancer treatment!

Hope the house alterations go well.

Moyna xxx

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That’s quite scary, Moyna, because his story is very similar to mine. However, my haematologist has always felt that the spinal damage was not to do with treatment, he’d never seen or heard of it occuring like that. Also my neurologist is happy that the two conditions are not connected.

I did have two LPs with my chemo, they delivered methatrexate into my spinal cord to protect my brain from the cancer. However I had already had an MRI before the LPs which showed a spinal irregularity (they initially called it a syrinx). This has indeed changed shape and position over a succession of scans . And I have no detectable brain lesions, so my MS symptoms are all from the pelvic girdle down.

I can’t say for sure whether I had any early stage MS symptoms before my cancer. Once I had the cancer diagnosis I automatically assumed that everything was due to that- fatigue, shivers etc. I had terrible night sweats, which were definitely lymphoma symptoms.

Anyway, as I say, my consultants are happy that the two are unconnected. What cancer/treatment did you have? Mine was a chemo cocktail called R-CHOP, and I had 8 cycles, plus the two intrahecal methatrexate LPs and finishing up with two courses of IV methatrexate.

PM me if you want to chat more about this, Moyna.

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I am so sorry to hear your news Kev.

A friend of mine was found to have low grade skin cancer just under his eye. They cut it out (with a local anaesthetic) and a couple of months later they cut out a tiny bit more.

That was about 4 years ago and he’s had absolutely no trouble since. It healed perfectly and he’s fully discharged from hospital.

Hope this story is encouraging. As you say it’s a common problem and yours has obviously been caught early.

Take care… good luck with the ‘upstairs wheelchair’… sounds like a good plan.

Pat xx

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It’s great you still seem to be in in good spirits after another knock down, half the battle I always think. My Mum had the same removed from her forehead earlier this year, we have been assured they got it all. Hope it goes as well for you.

Love hearing about your renovations

Jan x

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Sorry to hear your news Kev, my father in law had the same problem on the top of his head about ten years ago, once it was removed he was fine and has had no reoccurrence… He’s now a very ‘with it’ 94 year old. Best of luck when you go to have it removed.

Upstairs wheel chair sounds like a great idea!

Enjoyed very much hearing all about your alterations…hope it will all soon be done and dusted for you…it seems to have been going on for an absolute age. I’m sure you are longing for life to get back to normal. I admire how you’ve coped…two days of a decorator earlier this year and I was climbing the walls!

Nina x

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Hi KeV

Sorry to hear your news, hopefully it can be sorted out quickly for you as you’ve caught it early.

It sounds like when your house is finished, it will make both of your lives easier, bet you can’t wait.

Pam x

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Hi Kev sending you a big Man Hug

I hope it all goes well both my brother and the other brothers wife have had bits cut off so lets hope it is straight foward.

Don

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Hey kev, hope it all works out Ok for you. I also know someone who had this done; just a quick day-case and they’ve been absolutely fine since.

Take care.

CP

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Cheers CP. I’m not getting too worked up about it. So many people have said what you said, so I’m not scared. It’s not as though there isn’t plenty of lovely PPMS stuff to deal with and take my my mind off it!

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Well, it’s done. The mole has been removed, but not without life shoving a few sticks through my spokes in the process.

Monday night, went to the loo as per expected normal timetable; deploy suppository as per usual- nothing. Ok, deploy pad and try again in the morning. Nothing. Hmm. Deploy clean pad and venture out in the cold to hospital. Feel like I am sitting on a pile of house bricks.

surgeon says, stay in your chair, I’ll do you there. Me, eyeing bed longingly, “Ok, if you’re sure.” He begins, but his oppo is being taught how to do it, and so I am overhearing a graphic description of someone cutting a mole out of the nape of my neck. Imagining it is far worse than watching it would be.

Now, I am not needle phobic or particularly squeamish, but I do have a tendency to low blood pressure following anything involving sticking needles in me, which is why I would have been happy on the bed- lying flat helps. As it is I recognise the signs that if i can’t get on that bed soon, I’ll be gone. I tell them.

“Can you hold on for a little while?”

I ask how long. 4-5 minutes? Nope, get me on the bed please. I then have to talk them through how to help me from my wheelchair onto the bed using my sliding board. Once I’m there I immediately feel better; he sews me up, I rest for a bit and I’m finished. Off home sore, emotionally exhausted, cold and constipated. Sleep surprisingly well through the evening and on through the night.

This morning, off to the doc’s for my flu jab and a blood test. Manage that. Now in front of the fire and comfortable at last. Apart from still being constipated.

“Living with PPMS” was brought to you by Kevco in association with Laugh a Minute Productions.

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Hello Kev, I hope that’s done the trick and you can find some time to unwind. “Living with MS” actually raises one’s humour to a level unknown to anyone but ourselves. The toilet ironies play a big part.

Best wishes, Steve.

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Hi KeV

Glad its been done for you, out the way now, time to relax and recover.

Hopefully back at home your constipation will be sorted, I find its always easier at home than anywhere else.

Pam x